tom's blog

Is it really mid-October?

Time sure does fly. It’s been a while since I’ve written anything. As you’ve probably noticed, I tend to write a lot more when things are tough, and less frequently when things are good – so if there’s a good bit of time in between posts, it’s generally safe to assume things are on the right track.
We had a very successful fundraising effort for the Light the Night Walk. Our team wound up raising over $16,000 which is pretty awesome. Last year, we raised $10k so this was a pretty significant increase. The first year, we really had no idea how to raise money and learned a few things along the way. This year, I felt we were much more organized, and hopefully by next year, we’ll be able to hit an even bigger number. We wound up coming in second place for fund raising for the Verona Park walk. The first place team was around $24k, so good for them… I was happy with second, and happy that they didn’t beat us by sixty dollars or something silly. We had a really good turnout of people who walked with us, and helped us raise money… so thanks everyone for being there with us and for all of the donations. The ceremony was really nice. After talking about the general fund raising, they read through a list of names of those who have passed away recently related to a blood cancer, and unfortunately it’s quite a long list. For each name called out, someone goes up to the stage and places a flower down in their memory. It’s really pretty emotional in general, but this year, we had a couple people walking with us who went up for someone who had passed, so it was a little tougher than I had remembered from prior years. After that, they move into the survivors, which is always great to see as they call out Anna’s name and she went up to the stage with TJ. For the walk itself, it was really amazing to see so many people out there. It felt like there were many more people than the prior year, and when we were about half way done, we were able to look back, and there were some people just getting started.
Overall progress for Anna has been great. The doctors are really happy with her progress and continue to cut back on her appointments and meds. When she first left the hospital, it was 3x week appointments, and as of now, she’s down to once every two week appointments. There are things she still needs to watch for, and may have to go to the doctors if something comes up, but thus far everything is continuing to trend in the right direction. She’s now at a point where she’s running errands and is home alone with TJ most days.  She’s also been taking TJ back and forth to Pre-K, which is great for both TJ and to give Anna a little break. The first few days were tough all around, both in terms of TJ having some issues with separation, and also for us to leave him there. It also brought me back to some of the conversations we had when Anna was at her lowest points in the hospital, and the need to fight through to see this kid grow up and go to school. The fact that she was able to be there was really important and is a great indicator of how far she’s made it.
We were actually able to go out on a “date” for our wedding anniversary this past week. Anna had been on restrictions to not eat out, for fear of infection. But, with her progress, they gave her the green light to go out at least for our anniversary. Even though dinner wasn’t anything overly fancy, it was nice to be able to get out for a couple hours.
With every week that goes by, we adjust to the new normal. It’s crazy to think that this adventure with Leukemia started over 2 years ago, and she’s now 5 months post-transplant.

Anna's birthday and some sad news

Anna’s birthday was this weekend. Given that she’s not allowed to eat out and isn’t supposed to be around many people, we had a bit of a quiet celebration at home. It was just us, her parents, and her friend Judy. It was good to see Judy, and I know Anna enjoyed the visit as well.

Anna’s continuing forward with her progress. The visible signs of GVHD are clearing up. Some areas like her hands are pretty close to being back to normal, and other areas still has some discoloration, but it’s getting better. Also, her hair is really starting to come back in… still way too short to do anything with it, but at least it’s starting to cover her head and soon enough will be looking good.
I forget if I ever blogged about this person before, but Anna had a friend from high school whose sister, Luz, had a similar diagnosis as Anna. Luz had undergone a transplant about 6 months in advance of Anna, and Anna spoke with her before Anna went in for her transplant. I don’t remember all of the details of the conversation, but remember that it was nice for Anna to be able to speak with someone who had firsthand experience with this.  Luz had been doing really well and had recently returned to work. We found out yesterday that she had recently relapsed and passed away on Friday. We went into the wake today and said our regards to Anna’s friend and her family. Our thoughts and prayers are with them.
It was a really tough night talking with Anna about this last night, and then going in today. Sure makes me slow down and realize how fortunate we are and reminds me to enjoy every single day.



Anna's continuing to make progress with her recovery. She's managed to put some weight back on, and is increasing her strength. She no longer needs to administer the IV fluids at home, and some of her meds are starting to decrease. This past week, they cancelled one of her appointments, as they thought she looked pretty good. She has had a little bit of a rash again, which is certainly the GVHD acting up, but it doesn't seem to be spreading. It looks like she'll wind up dealing with chronic GVHD for a while.
We went to the Light the Night kickoff last weekend. It's a pretty emotional experience. One of the executives with the foundation was giving a speach and referred to the fact that this pretty much would have been a death sentence about 30 years ago, and now the survival rates are just above 50%, with things trending positively every year. There's still a long way to go, but the progress really has been pretty amazing. There was a young woman, maybe 23, who spoke about her cancer and how she's doing these days. She's a few years removed, so her hair has grown back and she looked pretty good. They also showed a video that was really touching. They show quite a few family members talking about loved ones that they've lost, and then some folks talking about how they are alive today because of the Leukemia Society and the funds that have been raised. Really motivates you to get out there and start collecting your donations.
We sat at a table with a woman who had lost her husband a few years ago. She was really sweet and shared details of her husband's battle, and some of the tough decisions she was faced with. Her husband had been treated by the same doctors who treat Anna, and she wound up writing a letter for Anna to give to the doctors. It was a pretty emotional experience all around. Unfortunately, I didn't see the woman who gave the "warrior" speech from the prior year. I was really hoping we would have seen her, as Anna and I talked about her speech every day when things were at their worst. At the time the woman gave the speech last year, Anna was still in remission and I had no idea who often that I'd think about her words.
Everything else at home is good. Anna's mom has been with us non-stop for the past few months and it's really worked out well. She has to go back to work in another week, and I think we're definitely going to miss her. Next week my mom is down, and then after that, we have someone new lined up. TJ received a letter from his future pre-k teacher about how excited she is to meet him. It's pretty cool. I can't believe my little boy is going to school already.